Hello,
My name is Katrina and I am looking for someone or support group for spouses and family that are living with someone whom lives with pain. My husband was diagnosed with Chiara Malformation back in 2000.
My husband and I have been together for 19 years, and I have known and understood that my husband has headaches, he has gone for 2 decompression surgeries ( at least 16 years ago), I know that he has this disease, but reality has set in, within the last couple of months as he has "admitted to having the disease". I hope someone may understand, for 19 years we knew, but reality has hit us hard, well myself hard. Lots of changes coming in the next year....
How am I suppose to help my husband from this day forward, I know that he needs to be in a calm surrounding, have no commitments, be able to do what he needs when he needs, but how can we be married then? I will never leave my husband, he is my best friend, my soulmate, my confident, my rock. He has also been told that he will have to have his neck fused as well, as he was not tested for EDS before the first surgery and we believe what is happening is that the scar tissue is taking over his spinal column and making it smaller, it is know at 8mm round, also disc degenerative disorder, arthritis and bulging disc's .
I guess, I am hoping that someone may be able to suggest a good counsellor in Edmonton, I am thinking a regular counsellor would not understand what it is like to live with someone that lives in pain, so I am thinking that I should find a support group?
If anyone has any advice for me, I would truly appreciate it. I love my husband to the moon and back, I want to make life as easy as possible for him, but at the same time, I do not live in pain, we do want to spend the rest of our lives together, and I understand that I have to make sacrifices, and that I have to compromise, I understand all of that in my head, My heart though ..... wants to know what it is like to live a "normal" life. I do not mean to offend anyone with that statement.
I hope everyone has a fantastic day and a very relaxing Thanksgiving weekend

Hi Katrina

Welcome to NeuroTalk .

I hope that you will find the community as knowledgeable and supportive as I have.

I am sorry to read about your husband - I see that you have posted in the Caregivers Support forum. You could also post in the Chiari forum (https://www.neurotalk.org/forum71/) - members could offer you specific suggestions as to how to support your husband there.

Best wishes.

I am going to be 60 and have been in what is called "Intractable Pain" for most of my life. You just being there means so much. If he knows you will never leave, you are helping out so much more than you could possibly know.

If you need counseling, get it, but be mindful, as many of these people have no idea of what they speak of. Sounds corny, but after 3 near death experiences, I've laid it all out to Christ, and pray as my stream of consciousness. A lot of this involves listening, and then learning when I am stressing my wife out too much and need to carry that cross by myself. Not much to offer, but continue to continue, day by day, hour by hour, sometimes, moment by moment. In the long run, the only thing we can offer anyone in this world is love, that is the part we offer. The greatest achievement of mankind, if there turned out to be nothing. I do believe there much goodness that await us in truth though.

My being a Christian alone has not eased my pain, but I can understand it, and not react to it, which is half the battle. I let it ride over me like waves. Nothing works all the time, not even most of the time, the reality of this situation.

Hi John,
Thank you very much for the reply. Just having that has helped me today. Thank you. I am having a bad time this week as Thanksgiving day my son (18 yrs) fainted while in the shower so we spent the day at the Emerge with him and he will be going for cardio tests and such next month, then on Thursday we went to see the Neurologist for my husband and I have never witnessed such ignorance on the Dr.'s part. We asked if he knew about the Chiari he said yes and we asked if my husband and son should be tested and he looked at us and asked what EDS was!! I have been on the phone and finally have found a Dr. that actually knows about the Chiari (thank goodness). I have found it extremely hard to even find support groups to go to with my husband & we are both (it seems like drowning) just trying to make it through each day.
What is "intractable " pain if I may ask?

Hi Katrina,

I haven't been on here for a while so missed your post earlier. Welcome to Neurotalk (NT) and I hope you find some help here.

I don't have Chiari, nor do I know anyone who has it. However I have been in your position of being the healthy person in a relationship with someone who was chronically unwell, (now deceased). At the time I thought I was doing my best to accept and be understanding and tolerant of what they were going through. It wasn't until I myself became ill that I truly understood what it was like to live with chronic pain and all the fatigue, emotional, cognitive and neurological disruptions that come with it.

As John says - just your being there is an enormous help. Maintaining open communication with your husband and best friend is one of the most important things you can do for each other. It can be frustrating as the healthy person if you don't know what your partner is feeling or needs and ultimately may cause your partner to withdraw if you try to guess but it turns out to be the wrong thing. If you're able to have a frank conversation where you develop a type of 'shorthand' that you can use to interpret his particular needs at a particular time it can make things go smoother. eg he may just say "I want to rest today" and if you know up front that that means he's exhausted, in pain and just needs supporting or he may say "I can manage XYZ this morning" you'll know what level of functionality he has for that time. "People in chronic pain are often reluctant to continually speak of it but having a mutually agreed 'shorthand' for those who are their closest family and carers can be beneficial. The ill person doesn't have to constantly express their specific limitations and the carer has an understanding of what is required without having to have it repeated.

The other important thing you can do to maintain a loving relationship is to look after yourself. Make sure you set aside enough time to do things for yourself that nourish your spirit and strength. It may be as simple as a regular coffee morning with friends or going to the movies, an art exhibition, a hobby, exercise etc. Something you do away from your role as carer - it will benefit you both.

In regards to finding a support group in Edmonton I did a search for a Chronic Pain Support Group - unfortunately the Edmonton Group has been suspended since 2015 - You might want to contact the Calgary group for information:
Support | Chronic Pain Association of Canada (scroll down to find Calgary/Edmonton)
This particular group may not have specific information on Chiari but they may know where to direct you.

You're always welcome here if you need to talk or seek advice. I hope your son is doing well.
All the best.

Just wanted to say hi: this is my first day in this community. I have essential
Tremor and am looking forward to educating myself on neurological conditions...

Hi Frang

Welcome to NeuroTalk .

I hope that you will find the community as knowledgeable and supportive as I have.

The Movement Disorders forum (https://www.neurotalk.org/forum65/) might be worth checking out as far as your essential tremor is concerned.

Best wishes.